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This thesis is conducted within the field of childhood epilepsy and addresses parents’ health literacy (HL) needs and how to address those needs. The study site was the tertiary health service hospital, the National Centre for Epilepsy, Oslo University Hospital. Childhood epilepsy is associated with neurological, psychological, cognitive, and social challenges, which can reduce the quality of life for both the child and the family. Children rely on parents to manage their complex condition, administering medications, responding to symptoms, handling uncertainty, and coordinating with multiple services. Parents’ HL, their ability to seek, understand, evaluate, remember, and use health information, can affect children’s health outcomes. Healthcare professionals therefore need to provide tailored information that supports parental HL. However, there is limited evidence on how services and interventions can be adapted to meet parents’ diverse needs.
Guided by the Ophelia (Optimising HEalth LIteracy and Access) process for HL intervention development, this thesis had two overall aims:
1. To identify the health literacy needs of parents of children with epilepsy.
2. To co-design and feasibility test a new intervention to support parental health literacy.
Methods:
The project consisted of three studies: Study I (quantitative): Cross-sectional survey of parents using the Health Literacy Questionnaire - parent version (HLQ-p) and the electronic Health Literacy Scale (eHEALS). Analyses included bivariate correlations, multiple hierarchical linear regression, and cluster analysis to identify HL profiles.
Study II: (qualitative) Individual semi-structured interviews with parents from the identified clusters to better understand how they develop HL in relation to managing their child’s condition. Data were analysed using qualitative content analysis.
Study III: (co-design and feasibility) An intervention to address the identified parent HL needs was co-created using workshops with parents and multidisciplinary providers. The participants’ suggestions to enhance health services were analysed using thematic analysis. Feasibility was evaluated via interviews with parents and a focus group with study nurses (thematic analysis). Parents also completed pre/post questionnaires, and physicians completed a survey on the intervention’s impact on nurse–doctor communication about the child’s treatment.
Results:
Parents struggled most with navigating the healthcare system, obtaining sufficient information and receiving social support. Lower HL was associated with greater psychological strain, more absence from work, and children with comorbidities. Cluster analyses identified four parent profiles; parents in clusters 1 and 2, were more often younger, with lower education levels, whose children were more recently diagnosed, or children with comorbidities, had the lowest overall HLQ-p and eHEALS scores.
Three main themes were identified from analysing the interviews:
1) Alone with the responsibility: Parents felt isolated due to low local provider epilepsy competence, unclear responsibilities, and insufficient multidisciplinary collaboration.
2) The fight for information and support: Many had to push for access to competent help and actionable guidance, especially in the vulnerable period following diagnosis.
3) Developing vigilance and distrust of the healthcare providers’ competence: As HL increased, some parents became more vigilant and less trusting when they encountered poor coordination or inadequate expertise. Trust in professionals and timely access to competent care were essential for HL development.
The co-designed intervention aimed to strengthen parents’ functional and communicative HL. The target group was parents whose child was hospitalised for the first time at the National Centre for Epilepsy.
Components:
1. Pre-hospitalisation: A telephone consultation to assess HL needs and develop a tailored education plan using the Conversational Health Literacy Assessment Tool (CHAT).
2. During hospitalisation: Delivery of the tailored plan through individual consultations; with consent, information was exchanged with local providers to increase tailored disease knowledge, enhance understanding, and provide support.
3. Post-discharge (3–4 weeks): A follow-up consultation with a study nurse to review key information and address questions about ongoing care.
Feasibility findings: Parents found the intervention beneficial, especially the one-to-one conversations. Implementation was hindered by time constraints, staffing limitations, and nurses’ feelings of insufficient preparation. Further feasibility testing and organisational anchoring are needed before wider rollout.
Conclusions and Implications: In particular, parents of newly diagnosed children with epilepsy, and/or children with additional comorbidities, need more structured support from their local healthcare services to navigate services, understand and use health information, and manage daily care. A co-designed, nurse-led intervention focused on personalised assessment, tailored education, information exchange with local providers to increase tailored disease knowledge, enhance understanding, provide support, and ensure structured local follow-up was positively received and perceived as useful by parents. Further testing is warranted to refine the intervention, assess effectiveness, and embed it within routine care.
